My beautiful niece Gracie was recently diagnosed with Neuroblastoma (cancer). It is still early in the diagnosis and we are awaiting results to know more about the fight that Gracie will face. I've created this blog as an outlet for friends and family to stay informed about her journey and a way for friends and family to make anonymous contributions towards her care and the mounting expenses her family will face. Gracie is a fighter and the bravest 3 year old I know. Hundreds of people love you Gracie and are praying for you. "Be strong and of good courage for the Lord thy God is with thee" Joshua 1:9

Thursday, September 30, 2010

The night went pretty well. Her puking is a lot less and her pain is better managed although they are increasing the morphine every day and also today. Also more platelets today. Her sodium was 169 this morning at 400 so they gave her some ddavp and tested it again at 6 am and it was still high at 164. They decreased her iv sodium amount and retested at 4 this afternoon and it was 153.
They are taking the sodium out of her TPN as well and hopefully it will get back to normal. They think she was probably just getting dehydrated. Stupid diabetes inspidus.
They gave her some medicine for itching cause of her dry peeling skin. Her mouth is horrific. I can't even describe it as hamburger, I don't have words for it, just that I am SO glad for pain medicine!!! Poor sweet baby.
The doctor and nurse were raving about her and what a good patient she is. They said "seriously, she is so good about everything, she never complains and she is amazing." I said I hear that a lot :) but I don't even have to hear it to know. She is patient and sweet and close to perfect ( in my eyes) :) I cant imagine how mean and grumpy I would be if I went through what she does. I hear all the kids screaming at all hours of the day and night and that is normal! It breaks my heart for all of their suffering. Please pray for all of them and all the children affected with cancer and illness. God bless them.

Wednesday, September 29, 2010

The night was long with her needing the pain pump a lot. They increased the morphine again. She got platelets again for the 5th day in a row. They said she will probably keep needing them every day for quite a while since the platelets tend to be the last thing to grow. She also got red blood cells today. The day went fairly well in cancer's standards. the increased morphine helped a lot until her bedtime mouth care. She had the regular base dose plus pushed the button twice plus had the larger nurse dose. Poor baby. Now she is sleeping well and snoring. :) her skin is peeling on her entire body and is so itchy even with the constant amount of lotion. Her hair is all fallen out now and I adore her precious perfect bald head. Her mouth looks awful. Every day it gets worse even when I think it can't possibly. She is pretty tired and sad but she doesn't complain. She got a tiny hint of a smile when she received 6 letters yesterday. I think her mouth just couldn't move much but I could see the happiness in her eyes. It made me want to cry. Thank you to everyone who sent her letters and even some people I've never even met. We appreciate it.
I'm sorry for unloading yesterday about the comments! My Facebook inbox was flooded with people asking if it was them. I'm sorry for making everyone think it was them when really it is a select few. And it really only bothers me when I'm incredibly stressed out, like the last few days. :)
Gracie also had another chest x Ray as a continued followup for the chylothorax and it was still clear thankfully!! Thanks so much for all the prayers throughout everything these 7 months and hoping you will continue them for the remainder of her treatments through the spring. They are what helps the most.

Tuesday, September 28, 2010

Gracie got platelets again this morning-4th day in a row. she had an ok night as far as puking goes but her pain gets worse and worse every day. She is on the morphine continuously and also can push the button for more or the nurse can give her a larger dose. the nurse does the larger dose before every mouth care. She does the mouth care 4 times a day. She has to swish mouthwash and then clean her teeth with gel cam to prevent further cavities. I say further cavities because her entire mouth is full of cavities from the 7 previous rounds of chemo. She is going to need a TON of work when she is well enough. Some of the teeth will need to be pulled. Her mouth is what is hurting the most right now. She holds her hand over her mouth after the mouthwash and screams in pain.Sometimes just suffers in silence. It breaks my heart. I just cant imagine how much pain she is in for it to still hurt with all the morphine and methadone she is on.Her hair has started falling out and will probably all be gone tomorrow or the next day. At least this will be the last time for that since she doesn't have any more chemo!Gracie draws pictures and they still always have smiley faces. I am surprised it isn't frowns by now, but she continues to be happy and hardly complains at all. She does pictures on the cookie doodle app on the iPad. She still is enjoying her puzzles. I have been annoyed at some of the comments I receive here and on Facebook but I know all of you mean well and I try to not let it upset me. I truly appreciate all the love and concern. It is impossible to understand without going through it yourself. There is too little said and done about childhood cancer and educating people about the horrificness(is that even a word.) of it. I don't share every detail about what she has gone through or is going through mainly because of the comments. I don't want to offend anyone but I wanted to say something about it. We know the Lord is mindful of Gracie and all of our family and we feel His love abundantly. Thanks so much for your continued prayers.

Monday, September 27, 2010

This type of treatment is used in children with high-risk neuroblastoma who are unlikely to be cured with other treatments. It involves giving high doses of chemotherapy (higher than could safely given otherwise) and/or radiation therapy (total body irradiation or high-dose MIBG), and then replacing the body’s bone marrow cells, which were killed by the treatment. In the past, this type of treatment was commonly referred to as a bone marrow transplant.

The bone marrow is the soft, inner part of some bones where new red blood cells, white blood cells, and platelets are formed. Red blood cells carry oxygen to all parts of the body. White blood cells are part of the immune system, which fights off infections. Platelets are needed to stop bleeding caused by cuts and scrapes.

Both chemotherapy and some types of radiation can affect blood-forming stem cells in the bone marrow. (These are the cells that make the different types of blood cells.) Even though more intensive treatments might be more effective in treating tumors, they can’t be given because they would cause severe damage to the bone marrow, leading to life-threatening shortages of blood cells.

Doctors try to get around this problem by giving the child an infusion of blood-forming stem cells after treatment. This is known as a peripheral blood stem cell transplant (PBSCT). What It InvolvesThe first step in a PBSCT is to collect, or “harvest,” the child’s own blood-producing stem cells to use later. In the past, the stem cells were often taken from the child’s bone marrow, which was done by drilling small holes in certain bones. But doctors have found that these cells can be taken from the bloodstream during a procedure known as apheresis. This is similar to donating blood, but instead of going into a collecting bag, the blood goes into a special machine that filters out the stem cells and returns the other parts of the blood back to the person’s body. The stem cells are then frozen until the transplant.

After the harvest, the child gets high-dose chemotherapy and/or radiation. When treatment is complete, the patient’s stem cells are thawed and returned to the body in a process similar to a normal blood transfusion. The stem cells travel through the bloodstream and settle in the bone marrow. Over the next 3 or 4 weeks, the stem cells start to make new, healthy blood cells in the child’s bone marrow.

Until this happens, the child is at high risk of infection because of a low white blood cell count, as well as bleeding because of a low platelet count. To avoid infection, protective measures are taken, such as using special air filters in the hospital room and having visitors wear protective clothing. Blood and platelet transfusions and treatment with IV antibiotics may also be used to prevent or treat infections or bleeding problems.

A peripheral blood stem cell transplant is a complex treatment. If the doctors think your child may benefit from a transplant, the best place to have this done is at a nationally recognized cancer center where the staff has experience in performing the procedure and managing the recovery period.

A stem cell transplant is also very expensive and often requires a lengthy hospital stay. Because the procedure is so expensive, you should have an idea of how the costs might be covered beforehand. Be sure to get a written approval from your insurer if the procedure is recommended for your child.

Possible Side effectsPossible early complications and side effects are basically the same as those caused by any other type of high-dose chemotherapy or radiation therapy, and are due to damage to the bone marrow and other quickly dividing tissues of the body. They can include low blood cell counts (with increased risk of infection and bleeding), nausea, vomiting, loss of appetite, mouth sores, and hair loss.

One of the most common and serious short-term effects is an increased risk for infection. Antibiotics are often given to try to prevent this from happening. Other side effects, like low red blood cell and platelet counts, may require blood product transfusions or other treatments.

Some complications and side effects can persist for a long time or may not occur until years after the transplant. Be sure to talk to your child’s doctor before the transplant to learn about possible long-term effects your child may have.

Gracie has had a rough couple days. She got platelets yesterday and again this morning. They want to keep her platelets above 50 because she has had blood in her vomit from the severe mucositis. she is still puking quite a bit and in pain. Most of her pain is from her raw mouth and digestive tract. (from mucositis) she also has a lot of pain in her chest by her new double lumen line. her mouth really does look like raw hamburger. Her cheeks look like a chipmunk from being so swollen and she can hardly open her mouth. She has stopped talking cause it just hurts too much. She just uses hand gestures. The doc says this is pretty well expected and it will get worse around day 7. Worse!!! Ugh. She is on a lot of morphine and pretty doped up. She continues to amaze us and all around her with her courage and perseverance. She is an angel. Please pray for her pain to be less and for her mouth to get better sooner than later. It has been a rough few days and I am so grateful my husband was here with us.
Brandon leaves tomorrow for the week and will be back Sunday. Today I slept in till 11 am at the Ronald McDonald house and then he sent me to get pampered with a new haircut and highlights. It took 5 hours! It was a much needed break and I feel refreshed to go about the next 5 days alone. I also had the chance to relax yesterday and paint a canvas at the Ronald McDonald house. It was the first time I had tried painting on canvas and it was fun. I'd love to keep trying it.

Saturday, September 25, 2010

Gracie had a blood transfusion yesterday and platelets this morning. she also has a fever so they started antibiotics and drew blood cultures from her double lumen line and they also needed to draw from her port which wasn't accessed yet. This was around 4:30 am. She said " but its in the middle of the night!" my thoughts exactly. :) So they proceeded to tell her she needed to hold still and not kick or put her hands down, not knowing how incredibly awesome she is at doing what she needs to and holding still. Add two more impressed nurses to the tally.
We didn't get much sleep last night cause she was puking a lot and in a lot of pain as well. her mouth and throat are bright red and raw and very painful, especially when she has to do her mouth care. I about started crying this morning watching her tremble in pain and still willingly open her mouth without a fight to do her mouth care.
I went and took a nap at the Ronald McDonald house when Brandon got here his morning, he slept there last night. I wish they would let both parents stay with her at night but I guess it's good for one of us to get rest. It seems he got here just in time for the worst of it and I know I would be so exhausted doing it all alone, I am so grateful he can be here.
Today they increased her pain pump doses and she is resting well for the last couple hours. they will try her food pump again and see if she tolerates it at all. If not they will start TPN tomorrow.

Friday, September 24, 2010

Gracie keeps having a lot of nausea and vomiting so they turned off her feeds for a day or two. Her mouth is very raw now and will likely get worse as the days go by. So far she is still sucking her thumb but they say a lot of kids stop for good with the mouth sores. She doesn't complain of pain too much so the pain pump must be helping so that is good.
Ive had an emotional 24 hours. I think the stress caught up to me and having my husband here, I was finally able to let it all out. I am so grateful to have him. He is the only one who can understand how I feel. He will be here through Tuesday and come back next week. I mis my other kids so much and I'm grateful for my mom for staying with them.
The transplant itself is pretty uneventful. It took less than an hour. The man from the blood bank brought it in a big bucket of nitrogen and when he opened it, it made a little cloud like homemade root beer. :) then they thawed them out for a few minutes and hung it up like a bag of blood. now she smells like creamed corn. It is from the preservative they use, that makes the kids smell like creamed corn for about 24 hours. It is a really strong smell and fills up the whole room. It gave me a pretty decent headache. Lol, but she doesn't seem to be bothered by it. They say a lot of kids get nauseated from the smell.
tonight she starts her GCSF shots again that help with the white count coming back. She will have the shots for 10+ days. Now we are just stuck here waiting for her counts to return to normal which should take a few weeks. Things will get worse before they get better. After that she will have radiation for two weeks. They start that around day 42 if she is doing good.

Thursday, September 23, 2010

Daddy came today and brought the tinker bell moVie shes been wanting. As soon as she saw him she said "tinkerbell" LOL. Followed by "I love you" I told daddy the trick I learned yesterday to get her to say I love you. Usually if you say you love her she says " I already know that" but when I do the I love you hand sign she says " I love you" too funny. So of course tinker bell went straight to the DVD player. It was a cute movie and she liked it. Then she did a lot of coloring and crafts. I went and bought her 4 new puzzles today and she keeps wanting to do them. She is very good at them. she had to have the dressing changed on her central line today and she did awesome. They have to change the covering every week and it is painful cause it is really stuck on there. She is good at taking deep breaths and calming herself down. I told her she was going to be good at having babies someday. Then I realized she most likely won't have any biological babies if she even lives that long. You are born with all the eggs you have and all the treatments almost certainly have killed them all off. Oh well. That's the least of our worries. That is a conversation much much much later down the road. Anyway, they put her on a pain pump today and it seems to be helping. Her mouth is starting to break down. Her bones hurt a lot and she has had a lot of nausea and puked up almost all of her feeds which have been going around the clock now. And only at an ounce an hour and she still pukes. She is on a few anti nausea meds. She is still a happy girl and brings a smile to everyone through it all. Tomorrow is transplant day at 2:00, It doesn't take long and is much like a regular blood transfusion. I'll let ya know how it goes :)

Wednesday, September 22, 2010

Gracie is done with chemo forever!!!! So happy about that part. Last night and today she has had more pain and puking but she still continues to keep a smile on her face! She's amazing, I can't say it enough. :) Today she has done a lot of crafts and coloring and painting. And puzzles, she loves puzzles. She has been catching up on sleep now that she has her ddavp again. She was actually snoring in the night and again right now. I love to watch her sleep, she looks so peaceful and angelic, maybe cause she IS an angel! :) I sure keep busy with laundry even here. She brought three of her own sheet sets and usually goes through them all every day. Also her blankets, towels,clothes and stuffed toys and my clothes need washed every day too. It is nice that they have a washer and dryer for the families to use so the kids can have some of their own things from home. Right now in the BMTU there are only four little girls. 3 four year olds and 1 five year old. Not that they play together or anything. LolBrandon will be here in the morning and Gracie is so excited to see him. She asks for him several times a day. She is also excited he is bringing the new tinker bell movie that came out yesterday! She has been waiting forever for that movie.

Tuesday, September 21, 2010

Last night was pretty much the same, diaper changes every hour or more. Luckily she lets the nurses change the diapers during the night and let me get a bit of sleep. She will use the potty most of the time during the day but it gets tiring getting in and out of bed so often. her bone pain is getting a bit worse but the morphine helps a lot, the pain docs came by and said they can see about a pain pump in the coming days. the doc says the mouth and throat sores will start up in a couple days.She had another chest x Ray this morning that came back clear so that is good. They are going to switch her formula to one with some fat in it again, just not a lot of fat. she is almost done with chemotherapy!!!! Last chemotherapy!!! Only 3 more hours, then she will have a blood transfusion since her hemoglobin was only 6.8 today. she has been pretty tired but it is probably from the anemia. My back is killing me from sleeping on this crappy bed. I can't bend over at all. I am glad Brandon will be back on Friday to crack it for me. We miss him a lot. Gracie had me write a big list of things for him to bring from home. She is such a trooper.

Monday, September 20, 2010

Yesterday and today have been relatively boring, so that is good in this case! She has had a few episodes of nausea and vomiting but otherwise happy. Her bones have started to hurt and her central line site hurts a lot. She is on a lot of preventive pain meeds to get a head start on the pain that is to come. At home she took methadone every day. 1 mg twice a day. Now she is taking 2 mg 3 times a day and still asks for morphine about 3-4 times a day, that can give you an idea of her pain so far.
Overall, she looks good and is fairly happy. She hasn't had another dose of ddavp, because her sodiums have been steady at 142. They are doing good with monitoring her urine output and adjusting her iv fluids accordingly every four hours. This seems to do the trick and she isn't as thirsty either. The only downside is her peeing every 30-60 minutes around the clock. Only 27 more hours of chemotherapy to go and then we can get a more normal schedule for that.
We've been watching a lot of tv and there are a ton of toy commercials on, and almost everyone, she says she wants it! Lol. Or if it's for boys she will say " maybe Shad would want that" or " do you think you should get that for baby Von?" and the fashion Barbie every time she tells me Chloe wants it for Christmas. She sure is sweet. She misses her daddy a lot and asks for him several times a day. Next most would be her sister Chloe. Chloe is such a good sister to her and so sweet to her.

Sunday, September 19, 2010

Gracie got her quarter dose of ddavp and it helped a ton. She hasn't been thirsty since then and the puking stopped as well. I think the quarter dose might be the right fit cause she is still peeing out what they give her by iv but not peeing out too much and not terribly thirsty. They will give her another dose when her sodium is over 150. Her blood pressure has been lower though so they drew some labs for blood cultures just to check but they said she looks good other than that.

Saturday, September 18, 2010

Gracie had a long night with drinking and peeing because she didn't have her DDAVP. the nurses come in every hour and each time she had wet through the diaper on the bed. They made layers of pads on the bed so they could just take off the top layer and not have to change all the sheets each time. She drank a ton all night and didn't get much rest. Same thing today. This morning her blood glucose was 294( normal is 60-115) and her sodium was 147( normal is 135-145) They tested a few hours later and her sodium was 157 and glucose was 444! They said it is from the steroid she had yesterday called dexamethasone. It is five times more powerful than prednisone. She is supposed to take it the first three days but they decided to not give it today and see if it helped. The next time they tested her blood was at 5:00 and her blood sugar was down to 206 and sodium was up to 159. They decided that she was still peeing out too much even with all the iv fluids and her drinks. So they just gave her a quarter dose of ddavp to help. We will see how it goes and what the numbers do. They will also check her blood sugar through the night and if it is still over 200, she needs some insulin. They said this isn't uncommon with this steroid and the high glucose will go away soon. Only some people have lasting diabetes from it. I'm hoping it will go away but I was getting nervous this morning when they first told me, since my little brother has had diabetes since age 6.She has had a lot of vomiting today as well. She is in pretty good spirits today though and we made a little craft hand puppet. She is pretty tired and hopefully she will get better sleep tonight now that she has had the ddavp.I have been impressed. With the nurses we have had so far so I am happy about that!! :)26 hours down and 70 to go!

Friday, September 17, 2010

Brandon stayed the night with Gracie and I stayed at the RMD house because only one parent is allowed to stay the night. She had a pretty good night and no puking so that is good. I woke up this morning anxious and thought" am I really ready for what is to come?"I know we can only go forward, this is what we have been waiting for to rid her body of any lingering cancer cells.This morning Jim and Paul from hug works stopped by the room to sing to gracie. She loved it. Hugworks is a nonprofit organization that provides music programs and recorded resources for children with special medical and emotional needs. It definitely lightened the mood and brought a smile. They have been doing this for 29 years. Go to http://www.hugworks.org

A Brief History of Hugworks ®

Jim Newton was the founding staff member in 1981 and began what was originally named Celebration Shop, a 501(c)(3) not-for-profit. Celebration Shop supported tours to churches, schools and colleges, providing programs for youth and young adults. In early 1983, while on tour in Ohio, Jim was invited to sing with children at Columbus Children’s Hospital. He had never used his singing voice and guitar in the hospital. His experience that day put both him and Celebration Shop on a new life course, as Jim’s own personal words tell you here:

"I felt really awkward and inadequate to be singing with hospitalized children, never having done so before. And though the lobby setting with about 20 children gathered - some in wheelchairs or on crutches, some coming under their own power, and a couple in hospital beds - went okay, I really felt my repertoire fell far short of what the children really needed.Just as I was putting my guitar away, a nurse asked me if I would go to a room to sing for a little four year old boy (we’ll call him Toby - for purposes of family privacy) who was too ill to come out with the other kids. I agreed and she escorted me to his door. When she introduced me to this precious child and his Mom, she said, ‘This is Jim, he sings and plays guitar, and he’s going to make you feel better.’ Talk about feeling awkward and inadequate! Here I was with a very few, if any, real children’s songs - singing with a very ill little boy and a Mom worn out from countless days and nights of her hospital vigil - and I’m supposed to make them feel better!?! As the nurse disappeared out the door, I started to play and sing. I don’t remember exactly what song I did, and after the song was finished we just looked at each other in a tense silence - no claps, no smiles, no words. So, not knowing how to gracefully excuse myself, I began another song. In just a minute or so, I noticed that Toby was on the verge of a smile - just a hint around the corners of his mouth. And so I immediately started another song. Almost instantly, Toby broke into a beautiful grin and began to clap his hands together, totally out of rhythm but absolutely and perfectly wonderful! His Mom looked around at him in amazement and began to quietly cry - huge teardrops streaming down her face. That’s all it took for me! I began to cry too, but I kept playing and singing - and Toby kept smiling and clapping!!I visited with them for a few minutes, and when I had to go, Toby’s Mom walked me to the door. She said, ‘I don’t believe we’ll take Toby home from the hospital this time. I think we’re going to lose him. But you gave us so much today. He hasn’t smiled like that in weeks, and he’s never clapped his hands to music that way! Thank you so very much!!’As I walked down the hall, something inside told me this was where I belonged. Music and singing had always been so healing for me. Perhaps I could pass it on to children and families who needed songs of the heart.”

Gracie has been very grouchy today but has been eating pretty well and only puked once today. Every time she is sad or grouchy I ask her if she is hurting but she just says " I'm just mad/sad that daddy went home, that's all" finally when her pain is too much she will admit she needs something for it. I don't know why she won't admit it or ask for pain medicine. She knows it makes her feel better. I don't know if it makes her feel funny or something.They were going to start chemo at 1 today but her urine specific gravity was too high because she had had the DDAVP this morning. So it took till about 4 pm for it to come down to where they wanted it. They are going to try to go without any DDAVP these 4 days so her kidneys aren't holding onto all the chemo. I think that is an ok idea as long as she doesn't get terribly thirsty. We will see how it goes. She has only been needing it once a day lately anyway. They started the chemo at 5 and it runs for 96 straight hours around the clock. Wow! When I think of how awfully sick she was on 3-5 hours a day chemo, it is hard to imagine how much worse this will be at 24 hours a day. The dose is much higher also, I hate watching this poison enter her little body drip by drip. But I am glad there is such a thing. I can't exactly hate it if it is helping her. It is a fine line.

Thursday, September 16, 2010

Keri here with another challenge...a $12 challenge this time. It's been exactly 6 months since the $10 challenge so it must be time for another! Brandon's cousin MaryJo put together a family cookbook in Gracie's behalf. It contains favorite recipes of many family and friends of Gracie's. So here' the challenge Donate $12 to Gracie's fund through the paypal link above and we'll send you one of the cookbooks. Killer deal right? $10 from each cook book goes towards gracie's care (2$ for shipping). Make sure the address you put on the paypal donation is the address you want the cookbook mailed to and please make a note of "cookbook" so we know you want one. There are 200 cookbooks to sell! Who's up for the challenge???? On your mark, get set, GO!

This morning Gracie had surgery to place a double lumen central line. She did really well with it and after that she had an EGD to scope her throat and esophagus to see why she keeps throwing up everything. They found that she had a severe esophageal stricture. Toward the bottom the opening was so small, a pen couldn't even pass through. This is why she would puke up bite by bite, it couldn't go down to her stomach. She has been so hungry this week and wanting to eat and it has been so frustrating for her. The doc did a balloon dilation to widen the opening and she was a lot better after that. She had a barium swallow done to make sure everything was good and it is, she ate two bowls of cereal and some applesauce. We are now in her BMTU room that she will be in for the next month or longer. Today is called day -8. Transplant is considered day 0 so right now we are counting down. Tomorrow she starts her Intense chemo and it will run for 4 days around the clock. she has to have a daily bath and physical therapy, she also has mouth care 4 times a day, she just had the first mouth care and she wasn't too happy about it but of course she did it and held still like always. The nurse was so impressed cause they have to hold kids down all the time. They were so impressed with her during the barium swallow as well. She just amazes everyone. she is in pretty good spirits so far but I can also see a lot of anxiety. She is so smart and doesn't miss a thing. I also try to explain everything that is going on so there are no surprises. today is daddy's birthday and he will stay the night with her tonight and leave tomorrow afternoon to head home for work. It has been so great to have him here with us. He will come back next weekend. The unit here is pretty nice and they bring a food tray for the parent when they bring her tray as well. She is on a low bacteria diet and has to eat her food within 30 minutes from the time they bring it. Her food is made fresh when it is ordered so she isn't allowed to eat off the parent tray cause it might not be as fresh. :) we have already watched sleeping beauty, tinker bell, monsters Inc and my little pony and she did some puzzles.

Wednesday, September 15, 2010

Gracie's chest XRay was clear on Monday! Thanks for all the prayers. They said it actually looked better than the chest XRay that was taken on Thursday after the chest tube. All of her other tests came back okay too and so insurance has approved her and her doctors have cleared her for transplant. She goes in tomorrow. She will have surgery in the morning to put in a central line and also they will scoper her throat to see what the problem is there. After that she will start Myeloablative chemo to completely destroy her bone marrow. This will go for 4 days. After that she waits 3 days to give the chemo time to get through her system. They don't want the chemo still working or it would kill the new stem cells. So they wait a few days to give it time to leave her system. After the 3 days she will receive her own stem cells that were harvested months ago. Then it's a waiting game. It takes 7-21 days for the stem cells to engraft and show they are making new blood. During all this time she will have no immune system at all. She will be in the BMTU (bone marrow transplant unit) which is isolation with strict hygeine and cleanliness precautions. She will have to have blood and platelet transfusions and will get infections and mouth sores. They said the mouth sores are so bad their mouth looks like raw hamburger meat and even explaining it that way doesn't prepare you for how bad it really is. She is at risk for organ failure and infections of all kinds. I know it is going to be bad from what I've heard from other parents but even those who have gone through it with their own children say that you can't describe it in words. So the thoughts keep coming into my mind,is this really worth it??? But the benefits far outweigh the risks and anything to help our baby girl live and be healthy is what we will do. We have no other option. I will beposting almost every day. I'm sure it's not going to be the greatest news but it is more of a journal to keep track of things while I am in there with her.I miss my other kids so much already and it has only been 4 days. I just bawled kissing my baby Von goodbye. He changes so much every day. Please continue to remember our family in your prayers but especially sweet Gracie girl. Xoxo Lisa

Friday, September 10, 2010

Granpa and Grandma Bloxham came for a visit and brought Gracie a trophy that says "World's Toughest Kid" Gracie Bloxham. She LOVES it! What a sweet idea! She likes to tell everyone about it. She is so so strong and courageous!

G is for Gracie! She loves practicing her writing and doing her "school"

This was Sept &th. check out all that new hair! it is growing in quite dark this time. We were at the store and there was a lady that said "I like your pixie haircut. so cute" I think she was totally serious. :) lol.

anyway, the second week of chemo went ok. She was still puking a couple times a day except for the few days she was on emend. Last weekend we went down to the great wolf lodge with the whole family and grandma and grandpa. It was a lot of fun. We were only 40 minutes from ft worth for our appt on tuesday so Gracie and I drove over early tuesday morning while the others checked out and drove back home. Tuesday she had her echo and /ekg and then a clinic visit for labs. The doc was so happy to see how good she looked and that she was smiling and walking and talking. Wednesday she had a CT scan that showed more fluid on the left side, so they scheduled for a thoracentesis/chest tube for the following day since she was going to be sedated anyway for the Bone marrow biopsies.

Thursday she had an MIBG scan and then the other things. The surgeon said it wasnt the same clear fluid as last time, it was milky white and that means it was coming from something else. they call it chylothorax. basically the white fluid was fat leaking from the lymphatic system. now we have to change her diet to low/no fat and they gave us a new formula.

We go back down next week and they will do a chest x ray monday. If there is no new fluid then we can proceed with our original plans of stem cell transplant. if there is new fluid, we will have to manage this another way with drugs/more surgery and do another round of chemo before transplant. We are hoping and praying for no more fluid on mondays x ray.

Alex's Lemonade Stand

Gracie's family is raising $ for childhood cancer research through Alex's Lemonade Stand. Help Gracie's Team reach their fundraising goal. Alex's Lemonade Stand, fighting childhood cancer one cup at a time.